Where’d my infirmity go?
I’m now 16 months into my recovery, and things are looking pretty darn good from where I sit. I just re-read my last post from the 1 year anniversary, and while I promised this one would be funnier, I’m gonna fail. But I gotta crow about the way most of my infirmity has sort of melted away, like so much snow on a warm sunny day.
So let’s catch up on the happenings! In October-November, I transitioned from training wheels (driving buddy) to being able to drive on my own, yay! Being locked up in the house with no way to get out (other than walking the dog) was a real bummer. I’m still not doing more than just local around-town driving, but this is a humongous improvement for me. I can’t tell you how liberating being able to drive has been. I used to take it for granted but after a year of not, it’s truly a blessing. And I haven’t hit anybody – yet!
In November-December I started weaning myself away from the cane, and by Chanukah, I was leaving it by the front door all the time. Now it’s just a decoration and reminder. Oh, I’m not ignoring it at all, I’m re-starting my cane self-defense training that I’d started working on after I got my 2nd degree in TKD. So I may still have the cane with me when I go places, but I no longer need it for balance and support. Well, maybe when I get a little tired I might lean on it…
In December I had my six-month checkup with my BFD, Dr. Edy A. and he reiterated what he’d said back in July – I have an unremarkable brain (always good for a laugh!). Aside from the void where Marvin used to be that is… He did say that I can now just get a brain MRI and see him once a year instead of every six months, so yay again! We did hear something he’d probably told us before but that never registered – full recovery could take 3-5 years. A little downer, but I’m feeling so good it didn’t really faze me at all. Of course, if I don’t continue to progress, I might start complaining, but that ain’t gonna happen, right?
The end of 2014 brought the return of more work for me on Practical Help for Your Digital Life®. Going back to my roots sort of. I’m still focused on providing the Practical Help articles on the website, but I’m also returning back to helping more individuals 1-on-1. And that leads me to the next improvement; stamina! I started with a 3-hour time limit for helping folks (along with a once-a-day limit), but quickly found that I could handle more. Over the last three weeks I’ve noticed that my need for daily downtime has…gone down! I used to reserve the late afternoon for a lie-down or nap, because just being vertical sapped so much of my energy. But now I seem to have replenished the stores of energy, so I only need a lie-down perhaps once or twice a week. Other than a good night’s sleep every night of course!
So what’s left for my recovery? Hmm, I still have a bad case of tinnitus, which keeps me from the aforementioned good night’s sleep. Will be looking for more professional help in that, since my Audiologist can’t explain why it gets louder when I turn my head. That aspect makes me think there is something else going on other than garden-variety tinnitus. And I still have some issues with stamina, the ‘cliff’ is further off than it used to be, but still there. I can’t really predict how far away it is, but once I get to it, I fall off and crash. So I’m continuing to limit the amount of work and interaction I do out of self-protection.
And lastly, I’m still having a ton of trouble dealing with loud noises (especially in my right ear) and crowds – having multiple conversations going on around me always drives my headache back up to the early days when it was always around a 4 on the Lego-pain meter, and shooting up to 7. Fortunately, the 7’s are very few and far between now, and my old stand-by the icepack still does its job to make that manageable without resorting to drugs.
I tried going to the movies in December (saw Birdman). Watching the movie itself was fine even with the camera motion, but the crowds before and after were kind of painful. Like the headache kind. Nothing personal to you movie-goers, but even my fancy noise-cancelling headphones can’t stop the conversations from twisting my brain. And I’ve tried attending group affairs, but everytime I get around a bunch of people (even nice ones!), my head starts ballooning and I gotta go find a quiet place. Thanks again Barry for helping out!
Dr. Edy thinks inside of 4 months even those problems will fade away, and I’m hopeful he’s right. If not, I’m seeking a partial refund-not! Maybe he’ll go back in and fill the cavity with spackle or something. He did confirm that the part of my brain that Marvin displaced has to do with
Way back in September my angel neurotherapist, Dr. Mary Lee Esty, had asked if I’d be willing to talk to a reporter about my experience, seems like there’s a lot of news in the world of neurotherapy and neuroscience these days. Or maybe I’m just attuned and watching for all that news. Anyway, I of course said yes, I’ll do anything she wants to help promote her treatment for folks with any kind of brain injury – soldiers with PTSD, football players with multiple concussions, kids with ADHD, and even patients with Down’s Syndrome.
So in mid-November, a reporter from the Washington Post did chat with me for awhile, and got a little of my story. Weeks went by and I heard nothing more, so I figured the project didn’t make it to the editor’s desk. Then last week, I got an email from the Post asking me if they could take some pictures. Sure, I said, I’d be happy to let them take pictures of my ugly mug – anything to help Dr. Esty! A few days later a very nice newspaper photographer came and took hundreds of pictures of me. I guess I don’t pose so well… Lo and behold on Tuesday the Health section of the Washington Post ran the story (here’s a link). Not too shabby, but I wish they’d have led with Dr. Esty and her treatment instead of me!
So all in all, things are pretty good and continuing to look up! And I know in my heart that I couldn’t have made it very far at all if it wasn’t for that wonderful angel bride o’ mine, Nicole. I’m continually amazed at how she juggles so much and always looks so calm and composed, and beautiful! I’m the luckiest guy in the world, I guess she got the short end of that deal. But hopefully as I continue to improve and get back to a new normal, I can lean on her a little less and be a little more helpful. And thanks to my many friends and relatives for their patience and loving-kindness. You don’t know how much that helped me get this far. You know who you are, so just…thanks!